Summary:

This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Dr. Jennifer White, age 64, is read her rights in a Chicago police station. But how much does the retired orthopedist who specializes in hand surgery really understand? Dr. White has Alzheimer's dementia. Her score of 19 on a mini-mental state examination (MMSE) is consistent with a moderate degree of cognitive impairment. She is questioned about the death of a neighbor, 75-year-old Amanda O'Toole, who lives 3 houses away. Amanda happens to be Dr. White's best friend and the godmother of her daughter. Amanda died at home, the result of head trauma. Four fingers of her right hand were cleanly and expertly chopped off. It seems that Dr. White is genuinely incapable of recalling whether she committed a murder or not. The physician is not charged with the crime but remains a suspect.

Dr. White's memory and mind are no longer reliable. In her lucid moments, she jots down notes in a journal. She dubs the notebook her "Bible of consciousness" [5] and it assists her in filling in the blanks of her past life. Her husband James has died. She has approximately $2.5 million of financial assets. Her two adult children - Mark and Fiona - squabble.  Throughout the course of her disease, family secrets are revealed and intimate details are exposed. Relationships fray.

Despite a slew of prescription medications (galantamine, an antipsychotic, an antidepressant, and a benzodiazepine as needed), Dr. White's mental status and behavior deteriorate. Her confusion, wandering, forgetfulness, and episodes of agitation worsen. The story is structured in four sections, based on the residence of the protagonist: First is Dr. White's time in her own home aided by a live-in caregiver, Magdalena. Next is her stay in an assisted living facility. Then she briefly escapes from that place and has a 36 hour adventure of sorts. Finally, Dr. White is incarcerated in a state mental health facility.

Ultimately, the circumstances of Amanda's death are made known. And while Dr. White did not kill her best friend, the surgeon was present at the scene with a scalpel in her hand. Another character was there too.

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Mija, a 66 year-old woman, is raising her daughter's grumpy teenaged son and trying to make ends meet with a part-time job as a maid for an elderly, wealthy man who has suffered a stroke.

She finds herself searching for nouns, and after consulting a doctor, is told bluntly that she has early Alzheimer's disease.

Perhaps because of her preoccupation with language, she joins a poetry class and strives to write, listening carefully to the poet-instructor's philosophical advice on vision and creativity. Throughout the film, she carries a little notebook with her and pauses to write her thoughts about flowers, beauty, birds, and apples.

A young girl in the grandson's class has committed suicide by drowning and Mija witnesses the mother's grief. From the girl's diary, the teachers and family learn that she had been repeatedly raped by six boys, one of whom is Mija's grandson.

The fathers of the other boys try to make a monetary settlement with the bereaved mother; they urge Mija too find an extraordinay amount money. In despair, she extorts the money from her employer as a "favour"-but the boy is utterly indifferent to her action, and in the end, is taken by the police anyway. Mija summons her daughter. She leaves a bouquet of flowers and the one poem that she managed to compose for her instructor to find at the last class. The daughter arrives to an empty home and we assume Mija has drowned herself.

 

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On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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As the story opens, Sage Priestly, 17, is running for class president against Mona, whose popularity Sage finds both threatening, fascinating, and a matter that keeps her in a state of uncomfortable envy. In her efforts to "be Mona," Sage undertakes a drastic diet, changes her haircolor, and focuses all her leisure dream time on Roger--a boy she can't see is incipiently abusive, though her long-time friend, Vern, loves her in a healthy and faithful way--a love that is tested when Sage starts dating Roger and suffering actual physical abuse.  As we learn about her troubled social life, we also learn that at home Sage is a caregiver for her single mother whose bipolar disorder  and depression pose a huge and confusing challenge to the teenage daughter.  Vern's parents eventually intervene to help both Sage and her mother get appropriate care and oversight, and Sage begins to recognize in Vern (and his gay friend Walter, who has suffered his own social challenges) the kind of friend that will last.  The book includes an afterword in which the author provides a note from personal experience on bipolar disorder (one of her parents was bipolar) and abuse, and lists helpful resources. 

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Holding Our Own: Embracing the End of Life is a documentary film that shows aging and dying as anything but morbid, and death as the final healing in the hospice way. Art and music are combined as a way to bring people into a subject that they'd rather resist.

The film begins with an art opening in New York City and with the commentaries of curator and others as they view Deidre Scherer's large fabric and thread paintings (see annotation of "Surrounded by Family and Friends")--of people at the last moments of their lives. The artist has captured for us, even in the midst of suffering, genuine moments of tenderness.

An interview with palliative care physician Ira Byock guides the conversation, presenting a most refreshing doctor's perspective. The commentaries of hospice personnel, artist, and members of the Hallowell singing group punctuate the profoundly intimate scenes, filmed in institutional settings and in homes. The singers, who sing to the dying patients, see beyond their own fears; they recognize and want to honor dying persons for who they are: "This is not about singing it right for an audience...its about being totally present for the people you're singing for...and wanting it to be a gift." They model the magic of human connection called by Byock "the ground substance of therapeutics" The healing is mutual: "I can feel sad, cry, I can feel a heavy heart...but it's not depressing....It's a wonder...you can feel love, joy, sorrow, but so alive.... you feel the blessing of your own life."

Two additional segments, "More about Deidre Scherer," and "More about the Hallowell Chorus, and a concise study guide are offered with the DVD.

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This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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As Audrey Young describes her process of becoming a compassionate internist in a besieged public hospital, she simultaneously argues for turning the hospital's patient care and financial practices into a model for improving health care in America.  Young, a compelling storyteller, first entered Seattle's Harborview Medical Center in 1996 as a third-year medical student on trauma surgery service.  She completed a residency there in general internal medicine and stayed on as an attending for six more years.  She stayed, she tells us, because she met physicians "committed to a vision of equality" who were "the sort of people I hoped to become" (xiii).   She also "fell in love" with "the story of a unique place" (xiii).  Young's stories of that often chaotic place, where ambulances regularly transport homeless, indigent, addicted, and mentally ill refugees from neighboring private hospitals, emphasizes the ways the Harborview staff manages to treat patients with dignity and to choose an ethic of hope in the face of dire circumstances.           

We quickly learn that at Harborview compassion is expressed concretely as actions toward patients.  Michael Copass, known as "the mostly benign dictator of emergency operations," pronounced the core of these actions in what came to be known as his commandments:  "1. Work hard.  2. Be polite.  3. Treat the patient graciously, even if he is not the president of the United States" (9).  Politeness always meant asking "'How may I help you, sir?'" regardless of the patient's social status or addiction history.  Politeness sometimes meant finding a way to reach the patient who regularly threatened the staff.  Young finds ways and creates a therapeutic bond.  But working hard and treating patients considerately also took measurable forms, such as not allowing emergency patients to wait.  Facing a flurry of admissions, the Emergency Department (ED) staff interpreted a young Ethiopian's complaints about pain as a drug addict's ploy.  Because Young glanced at the admissions board and noticed that he remained unattended for three hours--far longer than Copass could tolerate--she jumped into action.  He suffered, she discovered, from a collapsed lung. 

However, Young moves her narrative beyond individual doctor and patient encounters and into the larger, interrelated social and financial structures in which medicine is practiced.  For instance, she links meager funding for drug and alcohol rehabilitation programs with expensive ED admissions and rising healthcare costs.  In the chapter "Bunks for Drunks," Young visits an experimental residence that houses homeless addicts in furnished studios with private baths and cooking appliances.  Although residents can keep alcohol in their rooms and elect not to participate in the home's social services, including counseling, alcohol consumption and ED admissions decrease.  While the chapter points out the cost savings of such arrangements, Young further urges readers to value the dignity residents experience there.

In "Black Friday," Young details the hospital's tense, but ingenious responses to a Mass Casualty Incident, the result of carbon monoxide poisoning, which almost depleted the resources of all of Seattle's medical centers.  The final chapter, "A Vision," outlines how Harborview has tried to succeed as both a charitable institution and a business, as a provider of both indigent and luxury care, with the hope that others will follow the medical center's example.  However, in presenting her recommendations for "health justice," Audrey Young also makes the case that "seemingly ordinary citizens" are implicated in healthcare reform (231).  To enable their informed participation in making changes, Young includes an appendix with further readings and another that lists strategies for effecting reform.  

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